For the 250,000 young women under age 40 in the U.S. who have Primary Ovarian Insufficiency (POI), the diagnosis requires facing many physical and emotional challenges. The emotional fallout from POI has led to a call for greater awareness and sensitivity among healthcare providers to help their patients cope.

Even the name, Primary Ovarian Insufficiency, has evolved to keep up with modern attitudes. Originally referred to as Primary Ovarian Failure (POF) and in some cases premature menopause, POI is neither of these conditions. Consequently, women faced a great deal of shame and isolation based on several myths and socio-cultural standards centered on a woman’s purpose.

With POF, the emphasis was on the word ‘failure’ in terms of the ovarian functions and women’s reproduction. While modern medicine recognizes that with POF/POI, the ovaries are dysfunctional and not ‘dead,’ the attitudes of the past equated ovarian failure with women’s failure. If women were unable to bear children, did she then serve a purpose or contribute to society? These prevailing thoughts permeated all aspects of social consciousness, making young women feel as though they were unfit as women because they would not have children.

The lack of suitable treatment options to restore ovarian functions back to ‘normal’ levels still exists; there are no approved medications safe or effective enough to help with POI.

By the late 1990s and early 2000s, advances in women’s healthcare began to understand POI as ovarian dysfunction. Contrary to past beliefs, up to 10% of women diagnosed with POI will become pregnant either by choice or by chance. This is a small window for those wanting to have families, but it indicates a certain measure of hope for young women as they plan their futures.

Dr. Lawrence M. Nelson, a specialist in women’s reproductive research at the National Institutes of Health in Bethesda, Maryland, indicates the importance of the shift from ‘failure’ to ‘insufficiency.’ History determined that women were obligated to produce children. Those unable to do so faced the social stigma of being barren or promiscuous. The purpose for intercourse was reproduction and not pleasure.

Childless women faced internal and external shame-based threats to themselves in terms of parenthood (or lack thereof,) self-image. Moreover, women bore the scars of emotional and physical health due to their ‘failure’ in their duty.

POI today
Unlike most women who deal with menopause later in life and have years of experience to deal with the changes in their bodies, younger women are not as fortunate. With some girls as young as their early teens developing POI, they grapple with several issues.

In many cases the choice of whether, or when, or even if to have children is decided for women with POI. Despite the earlier acknowledgment that women with POI may become pregnant, the odds are still in favor of not conceiving. For a young woman who has not even had time to even think about family planning, in essence this decision has been taken from her and she has lost some control over her body and her life.

Feelings of grief associated with loss are very common for women with POI. Having to face the possibility that a part of life is closed off can have devastating effects. This is further compounded for women dealing with partners in relationships and even family members who may be unable or unwilling to accept the slim chances of children or grandchildren.

Women with POI are still subjected to past attitudes that associated POI with early menopause. These women fear that their bodies are aging prematurely and presenting many other age related health issues. POI is a matter of dysfunctional, not aging, ovaries. POI is not a cause of aging. Menopause itself is not a direct cause of aging but because these two conditions take place during a woman’s middle years, the association is natural if not completely accurate.

As young women question their bodies, they also may question what Dr. Nelson refers to as their existential purpose. Who am I as a woman? Does POI make me ‘less’ of a woman? What is my purpose both as a woman and in my relationship?

It takes a dedicated and caring doctor to guide women through this confusing time. With a multi-pronged approach including possible fertility treatments, counselling, and ongoing lifestyle monitoring, women with POI can regain some of their lives. From ‘failure’ to ‘insufficiency,’ if medical advances are still lagging perhaps the terminology and attitudes will not.

Primary Ovarian Insufficiency is Not an Early Menopause, presentation by Dr. Lawrence N. Nelson, NICHD Intramural Research Program on Reproductive and Adult Endocrinology, National Institutes of Health, Bethesda, MD – NAMS 21st Annual General Meeting 2010.